Treatment, symptoms & side effects
A forum to focus on treatment related issues, symptoms and side effects from treatment.
222 topics in this forum
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Heidelberg and UK treatment
by Ruthus- 1 reply
- 10.3k views
I have read threads from 2013 related to Heindelberg in Germany being advanced in the treatment of pancreatic cancer and being more willing to operate on what have been deemed inoperable tumours in the UK. However have also heard controversial stories that the success rates may not be great (I don't know if this is correct) and is very expensive. I haven't found any recent information and am wondering is Heindleberg still seen as being advanced than UK in terms of considering surgery or have things improved in certain UK hospitals in terms of considering surgery? I would be interested if anyone knows and what would possibly be attempted at Heindleberg which would not in U…
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Folfirinox minus Irinotecan
by Marieb- 0 replies
- 10k views
Hi all Wondering if anyone has any experience of getting Folfirinox minus Irinotecan. Since the beginning of my chemo (have had 5 2 week cycles) I have had issues which my Oncologist is confident are adverse reactions to Irinotecan. These start in the clinic when they administer it present themselves as flu like systems (on one occasion), D&V and incredibly painful stomach spasms, nausea etc. They tried flowing down the administration from a half hour to 1 hour with multiple Atripine injections both in the clinic and as back up when going home . As I am tolerating the other drugs well they have decided that the best course of action is to remove this drug fr…
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Folfirinox and fatigue
by kittycat- 12 replies
- 18.4k views
Is it usual to have severe fatigue for a whole week on this regime. Roger has had his 6th cycle and has spent most of the last week asleep. He goes to bed after breakfast, after lunch and then again after dinner before getting up to watch a bit of TV. The last cycle was about 3 days like this and other days just having a nap. Is this likely to get worse? It's no life and we will discuss it with the oncologist but I wondered if others had a similar experience. Sue
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- 6 replies
- 14.3k views
Rob had 7 treatments before he had to stop for 4 weeks due to low platelets. Apart from an intitial rise in tumour markers levels just after starting treatment (presumably keeping going from before) they have fallen consistently ever since, including during the 4 week lay off. He has now had 2 more sessions but on the second one the tests showed the tumour markers have risen again and he couldn't have the third in the new batch because he has low platelets again. I suppose the tumour marker rise could be due to the 4 week delay but of course the obvious reason is that folfirinox is not working any more. Any experience of blips with tumour marker levels going up briefl…
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Hair Loss on Gemcetabine
by CheshireBee- 7 replies
- 22.9k views
Hi everyone, I am new to the forum so please forgive if this has been covered elsewhere. I am on my 3rd cycle of Gemcetabine, my hair has been thinning since the end of my 1st cycle and still is. Does it stop thinning or just keep falling out? has anyone lost all their hair while on Gemcetabine as Nurses say it usually only thins. Does anyone know if there is any new hair growth while on this chemotherapy? Also how long after the Chemotherapy has been completed does it take for hair to stop thinning and start to thicken again? CheshireBee
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Folfirinox & Hair Loss
by Marieb- 7 replies
- 15.5k views
Hi all I am about to start my first cycle of Folffirinox and wanted to know your experiences of hair loss. Is it something that happens quickly? Marie x
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How do I know if creons are doing any good?
by kittycat- 4 replies
- 11.5k views
My husband has been taking creons for a few months now and I had hoped that his weight would increase but it isn't really. He puts a couple of pounds on then loses them, sometimes because of diarrhoea, and although his appetite is good and I am fortifying his food there is little change. He is having a pretty rough time with fatigue and has several days where he is in bed quite a lot and has little energy but I had hoped for an increase from 7st. Has anyone else experienced this. Sue
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Prosource supplement / Creons
by Slewis7313- 0 replies
- 9k views
This is directed at the Nurses, but there may be some experience out there amongst your good selves. I am struggling to hold my weight, so have been prescribed Prosource nutritional supplements to help. Should I adjust my Ceon intake when using this supplement? Steve
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Statin Anyone?
by MSH- 5 replies
- 12k views
Very interesting reports stemming from the 2015 ASCO meeting, suggesting that statins may sometimes be as effective as chemotherapy. The benefit seems to be from slowing the progression rather than prevention. http://www.theguardian.com/society/2015/jun/03/statins-could-halve-risk-of-dying-from-cancer-says-major-study I know we need more studies, but I can't afford to wait for them. I'm seeing my GP tomorrow
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Side effects
by Loretta- 6 replies
- 11k views
Hi This is my first post and wonder if you can help. I had a Whipples on 3 March this year so will be 12 weeks next Tuesday. I have just had my 3rd chemotherapy - gemocitabin. I seem to be having a sore mouth. Is this a side effect of the chemo or something I've been eating? Although I'm old, 79, I came through the op ok. I was in hospital for 8 days only. I find I'm very tired and although fit for the op now find walking the dogs and going up more than one flight of stairs difficult. I'm sure this will improve once I can work on my fitness. Loretta
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Affects of Folfirinox
by kittycat- 5 replies
- 11.7k views
My hubby started on the first of 12 treatments on Monday and suffered awful vomiting on Tuesday and Wednesday but that seems to have stopped now however, he is very tired and has no energy at all. He has lost a lot of weight and is now under 7st, but is he likely to feel better after a few more treatments or is this what we can expect from now on. He's eating quite well, allbeit small meals, but is very quiet and subdued for most of the time and I'm not sure how to deal with this. Has anyone else had this kind of experience? Sue
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I thought it might be useful to write about our experiences of Abraxane so far, as so few people have had this, but really hoping it will get approved by NICE, as there are so few options out there. Paul has now had 4 lots of Abraxane, two at a large doses and then one course of just gemicitabine and then two reduced doses of Abraxane due to the amount of peripheral neuropathy he has had. He had a scan 4 weeks ago which showed some shrinkage of the tumour, but that may have been down to the Abraxane or the course of Folfirinox he previously had. He has this combined with Gemcitabine every fortnight. Ideally it is recommended that it is give weekly for 3 weeks and then…
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Ensure and smelly gas
by pauljonathan- 7 replies
- 11.6k views
I had an extended whipple operation one year ago and continue to have problems with: (1) having to drink three Ensure bottles a day, which leaves me bloated, uncomfortable and often in pain, and (2) smelly gas, which is embarrassing, especially if I am in a friend's house or at work and need to use the bathroom. When I had the operation I understood that any problems would be resolved within a year, but the last time I saw my consultant she said this could go on for years and perhaps the rest of my life. Any suggestions welcome!
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Quality of life survey/ Post Whipple
by pauljonathan- 0 replies
- 7.6k views
I felt my quality of life may be below that of other people who had experienced Whipple operations and the survey below helped back my opinion and argue for a change in intervention. I have no medical training but I am posting the details here in case it may be useful to others; I hope so. First I quote from a paper by Huang et al. : "Researchers at John Hopkins University mailed surveys to Whipple operation survivors who had been operated on at Hopkins between 1981 and 1997. The questionnaire was broken down into sections that looked at physical abilities, psychological issues and social issues; an additional section evaluated functional capabilities and disabil…
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port problems
by Didge- 1 reply
- 8.1k views
we are having a lot of pain which appears to be from the port area or where it goes under the skin. the port has been in for getting on for 6 months. anyone had experience of pain from ports? of course it could be something more sinister but he says it 'feels mechanical'.
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Duodenal Stent
by Kerri9499- 2 replies
- 9k views
Hi all I haven't posted for a long time but just looking for anyone with experience of duodenal stents and how you felt in the few days afterwards? Mum has been off Folfirinox since last summer and has been doing well with stable scans ever since but due to problems with eating, feeling sick, bloating etc over the last 6 weeks she has just had a duodenal stent fitted. Her symptoms haven't been relieved in the last couple of days though and she still feels sick, bloated and uncomfortable. Is this normal in the few days after the surgery? Does it take time to settle? I have called the hospital who weren't overly concerned just yet as no temperature or bad pain but we wer…
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Gastroparesis bewilderment!!
by Lis2012- 5 replies
- 14.8k views
Hi all, My Mom (57) was diagnosed in June 2012 with pancreatic cancer. It was thought to be operable but then during surgery, the surgeon discovered it had spread near the lymph nodes and could not detach the primary tumour without disrupting important blood supply. She ended up having a biliary duct bypass instead of the whipple. Anyways, after a 6 week recovery period, we met with the oncologist and she was prescribed the folfirinox regime. It was planned to have 6 chemo sessions, re-scan and then perhaps more chemo. She started the gruelling regime late August and went through the nausea, pins and needles (from oxaliplatin drug) etc but she was battling on. However, a…
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Where can secondary cancers originate
by Slewis7313- 3 replies
- 9.4k views
As I am shortly going to hopefully engage with Professor team, a question has sprung to mind for our Support Nurses, though I have put it on the forum as it may be of general interest: Do secondary cancers come exclusively from the primary cancer site, or are scondary cancers able to spread the disease and cause further additional secondary sites independantly of what the primary site is doing? Steve X
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Whipples Operation
by Guest simon- 14 replies
- 26.5k views
Hi there, I am about to go into hospital to have the whipples operation . wondered if there is anyone reading this who can be of some support . Am pretty healthy at the moment, so i feel a bit of a fraud, but this is mainly due to having two stents in my bile duct keeping it all open.I have a 2cm tumour in my pancratic duct, which has been causing me obstructive jaundice on and off over the last two years . My surgeon thinks it is benign, as it is slow growing(i first had a scan on it in June 2005 ) whilst living in Australia. My worst period was Dec/Jan just gone, my bilarubin level went up to 580 for a couple of weeks. The word itchy does not come close to discri…
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New to forum
by Iwillsurvive45- 12 replies
- 10.6k views
Hi I am new to this forum, I had my whipple 9 weeks ago, but also had the whole pancreas removed so am now insulin dependant, although everything is going well I am still losing weight I am taking creon tablets but cannot keep the weight on.
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Nanoknife - experiences?
by LMD- 10 replies
- 12.1k views
Hello everyone This is the first time I have posted... I have read many of your posts and am grateful for the help, hope and, at times, comfort they provide. My condolences to those who have suffered the loss of a loved one - so many brave people. My father has PC and I would really like to know about Nanoknife in case it is something which could help him. I have read the information provided by PCUK, which was really useful and I wondered whether anyone has any experience of Nanoknife treatment which they would be willing to share, please? Any and all information would be very much appreciated.... Wishing everyone all the best and 'stay strong' (I know how hard …
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total pancreatectomy
by Support Team- 1 follower
- 8 replies
- 15.9k views
we have been contacted by a gentleman in New Zealand who is looking for contact with others who have had a total pancreatectomy. Please contact us if you have been through this procedure and would like contact. He says " I'm 45 years of age with a loving supportive wife and 3 young children. In late Feb of this year I was diagnosed with a Neuroendocrine tumour of the pancreas. On 11th April I underwent a Whipples procedure where a total pacreatectomy was performed along with the removal of my Gall Bladder and Duodenum. I also had vascular reconstruction where my Jugular was removed for the purpose fo grafting new veins. Fortunately the tumour"peeled" away from the…
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Neuropathy and accupuncture
by Slewis7313- 7 replies
- 8.9k views
I have historically been somewhat sceptical about some alternative treatments, but when you are fighting the fight, it seems to open the mnd a bit. I am doing pretty well on Folfirinox, though the Neuropathy is starting to be an issue.....not really painful, but never goes away. On a cold day, it affects my tongue, cheeks(face) and even my ears. I have made an appoitment for next Tuesday for an accupuncture session with someone who is experienced with the procedure to alleviate Neuropathy symptoms. I am actually optimistic that it will help and will of course report back after the treatment. Has anyone else tried this? Steve X
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- 8 replies
- 10.2k views
For those who are new or who are just searching for help. My dad started last December 2013 with diarrhoea after each time he ate. Not 'our' kind of diarrhoea but explosive, watery, liquid. He was diagnosed with stage 4 pancreatic cancer in February 2014. He was started on creon to help with the diarrhoea. It didn't help. The consultants were wary to prescribe a lot of medication as they didn't want to cause constipation for him. They finally prescribed Loperamide which he takes 4 of, 4 times a day. His also takes codeine, 3, 4 times a day. He also has a Octreotide injection 30mcgs ( highest dose ) once a month, as well as 12, 40,000 creon every time he eats. Whi…
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- 4 replies
- 8.2k views
Now I'm NEVER one to promote the daily mail usually but this article popped up yesterday and thought I'd share it. The lady saw the same professor in London that Carl did, she had the same RF ablation on the liver Carl did too, but she had Nanoknife on the pancreatic tumour and 2.5years later is still doing well. I think this treatment above all others should be fast tracked into the NHS, CHEMO is obviously very important but this technology is doing amazing things it seems. I'm not saying it's a miracle cure, long term who knows, but it seems to be a great tool for drs when so little is available for pancreatic cancer. http://www.dailymail.co.uk/health/article…